The gap between being included and holding power
About this Episode
Bree talks with William Ward-Boas, a proud Autistic and First Nations advocate with intellectual disability from the LGBTIQA+ community, about what genuine co-design requires and why most organisations aren't actually doing it. Drawing upon over seven years' experience across the advocacy sector, William draws a sharp line between consultation and co-design, unpacks the trauma embedded in asking people to share lived experience without knowing where it will lead, and reflects on actively sharing power as they moved from project worker to board chair. The episode closes on William's framework: being invited into a room isn't influence, being consulted isn't being listened to, and being present isn't having power.
What You'll Learn
The difference between consultation and co-design, and why organisations need to stop using the terms interchangeably
What genuine co-design requires from the first idea through to delivery, promotion and evaluation
Why sharing lived experience carries a trauma cost, and what facilitators owe the people who share it
How William approaches power as Chair of VALID, and what changed after moving from project worker to board level
William's closing framework: presence, consultation and power are three different things
Resources Mentioned
VALID (Victorian Advocacy League for Individuals with Disability)
William's article on the Women Deliver disability intersection, published via Inclusion International (I couldn't locate this one directly. If you have the link from William, add it here.)
Keep Learning & Connect With Bree
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Bree: And welcome back to DEI Will Not Die. I'm coming to you from a very wet and cold Wadawurrung Country today. For those who don't know, I know we've got a few new listeners, Wadawurrung Country is right down at the south of the land known as Australia. I'm in a place called Geelong, and the Wadawurrung name for Geelong was Geelang. A lot of the place names around Geelong are actually derivatives of Wadawurrung language, which on one hand is lovely, and on the other hand doesn't mean that things were good. So I certainly pay my respects to elders past and present, and to the Wadawurrung people who continue to care for Country and teach those of us living on it how to care for Country too.
I've got another guest today, and I'm really loving attending some conferences and meeting people where I think, wow, I absolutely need to get this person on the podcast. I felt an instant affinity with William, the guest today. I like to feature people I know and get along with, because I think it creates deeper and richer conversations, and we had some really great conversations at the conference, so I'm keen to have this one. William, I'd love for you to introduce yourself to the audience.
William: No worries. Hi everyone, I'm William Ward-Boas. I'm a proud gender diverse gay male who is AuDHD with an intellectual disability, and I'm also Rainbow Mob, proudly. My mob resides in [Country name to be confirmed], in the southwest of Tasmania. I have a professional background in disability advocacy specifically. I've worked in that space for about seven, coming up to eight, years, across a variety of different initiatives and intersections. My key focus areas have always been autism advocacy and intellectual disability advocacy, but in more recent years it's broadened out to disability more generally, I think.
Even though those are my two areas of expertise, I've been fortunate to work with organisations like Inclusive Rainbow Voices, on their board of management. I'm currently the chairperson of VALID, the peak organisation for intellectual disability here in Victoria. VALID stands for the Victorian Advocacy League for Individuals with Disability. I've worked with organisations including Children and Young People with Disability Australia, AMAZE Autism Advocacy, Inclusion Australia, and I've even got some state government experience with the Victorian Public Advocate, talking about diverting from guardianship decision-making, and teaching service providers and supporters why diverting from a "guardian of last resort" model is the best option. In that kind of formalised decision-making pathway, it really strips the decision-making away from the person with disability, no matter their decision-making capacity.
So I've been around the ropes, and most recently I got back from the US, from New York, from the Conference of States Parties at the UN headquarters, where I got to meet some of my Commonwealth colleagues, which was very exciting. I met people from Korea, the Pacific Islands, Canada, the US itself, and an incredible Australian delegation.
Bree: Amazing, and I really love bringing a voice like yours onto the podcast. You've spent so much time in the advocacy space, and I think there's so much to learn for those of us doing diversity, equity and inclusion in workplaces from the work you're doing. Sometimes I think there's a really big gap between the advocacy space and DEI work, and that's to the detriment of the DEI work we're doing.
Let's start with this: we obviously met at the Women Deliver Conference, and had a conversation about how that conference had been said to be a lot more intersectional than it had been previously. For those who don't know, it's a gender equity international conference that was held in Melbourne earlier this year. You talked about where you saw intersectional work being done well, and where you thought there was still room for improvement. Are you comfortable sharing some of those thoughts for the audience?
William: Yeah, of course. I actually wrote an article piece through Inclusion International, because VALID is a member of that organisation, and we had some mixed feelings about the conference. I was really impressed with the women and gender-diverse focused work, and the Queer Deliver side event that took place. I think the highlight of the entire conference was the Indigenous work, especially from the New Zealand and Canada mob who attended. One of the groups was called ONWA, I can't remember what the acronym stands for, I'm not great with remembering things, but I remember them talking about how much their mob influences all of their decisions and work, and how that really feeds into community on the ground.
The thing I was disappointed by was the disability intersection within the conference. This was the bulk of our conversation, Bree. When we think about women and gender-diverse people who have disability, who've had a lot of decision-making capacity or fluctuating capacity issues in their lives, there's an expectation that disability will automatically be brought into those conversations. But the side event that initially took place didn't really capture that. Part of the problem was that the Melbourne Convention and Exhibition Centre, where it was hosted, had to move the location last minute, so it ended up wherever was available. That was the first part of the problem.
The second part was about the Melbourne Declaration itself, which is meant to be a document setting out the commitments Women Deliver will make to the international delegation, something they've done at each Women Deliver conference, as their CEO explained it. But the disability community didn't know what the Melbourne Declaration was. A lot of the delegation in the room didn't know what the conversation was about, and weren't part of the consultation period. When we spoke to Women Deliver, the International Disability Alliance, and Women Enabled International about it, there was this sense that the conversation had already happened and that people had been included, and they tried to give us reassurance. But the overall impression I got from the room was that people wanted to be part of the initial consultation, which hadn't happened.
Even I, and I'm a big policy nerd when it comes to the disability space, was surprised. I didn't even know this document existed. People were expressing disappointment, and there were big names in that room: Christina Ryan, Trisha Malone, the CEO of Women with Disability Australia, people from Children and Young People with Disability Australia, and the Pacific Disability Forum. The room was full of people with real depth of knowledge. I think the fact that they were caught off guard too, having to explain why people were upset, speaks to a gap between reading the room and what actual co-design and consultation etiquette should look like for a conference delegation.
I did a comprehensive piece on it, and I'm happy to share it so you can link it for the audience. I want to be clear it's not criticism of Women Deliver or the International Disability Alliance specifically. My criticism was of the session and how it was delivered in its original format, and of how it was communicated to us as a delegation. My overall critique was about genuine, meaningful co-design and consultation.
Bree: If I think about translating those learnings into workplaces, and even community organisations and not-for-profits, there's a lot of "co-design" happening, and I'm using air quotes here since this is an audio podcast, a lot of things get called co-design. What are the key elements that need to be in place if we're going to genuinely co-design with people with disability?
William: The biggest misconception, and the over-saturation of the term, is that "co-design" gets used when people actually mean consultation. That mix-up needs to stop, that's my first piece of advice. I've sat on tons of steering committees, co-design initiatives, projects, communities of practice, you name it, over the last seven years. If you want to genuinely do co-design, it means creation from the very beginning. The people you're talking about need to be in the room for the initial idea and concept, through building the framework for delivering the goals and actions, into the actual consultation, and through to turning that into whatever resource you develop, including the promotion and evaluation. Co-design means every step of the way.
Whereas if you're talking about one-off payments, one-off consultations, or focus groups, even two or three a year, that's not co-design, and workplaces need to stop calling it that. That's one of my biggest frustrations, not just in the disability sector but in DEI too, since I've had a foot in that world through my time in state government. You need to make sure your language matches what you actually mean, and if you mean co-design, you need to actually deliver it that way, in a format that's digestible and understandable, not a sixty-page document you expect people to absorb in one meeting before jumping into the next five. That's not effective co-design, that's ineffective and genuinely ableist co-design, and people get hurt and offended by it.
Bree: So a couple of things I'm hearing: if it's consultation, call it consultation, if it's co-design, do it properly from the start. And you're also talking about meaningful inclusion requiring more than physical accessibility of the venue and event, it's about the delivery and timing of information too. What else do we need to be thinking about?
William: Another thing people miss, especially people outside the concept of lived experience, is that co-design is trauma territory. You're asking people to draw from their own lived experience of the subject matter, to hand you their lives and experiences, good, bad or indifferent, and they're expecting something from that. Is this going to make a difference? Will I get paid for this? Where will this resource actually go? Trauma and lived experience go hand in hand in this work, and as the facilitator or moderator, you have to be aware that people are handing you themselves in that process.
If I were the person involved in a project, I'd always ask, where is this going? I don't want it sitting on a bookshelf at a university collecting dust, only to see the same initiative repeated again in two and a half years. I want it to actually influence the conversation, not have the same thing done over again.
Bree: That speaks to my own experience running focus groups in a consultation format. I always feel an intense responsibility that I'm capturing people's stories and experiences, and I try to make clear to clients that once I hand that information over, acting on it is now their responsibility. I think you're right that this often doesn't happen, we go back, consult again, capture people's stories again, put them through the process again, and then the plan drops. I like the way you've framed that as trauma that's been mined without leading to positive outcomes. Thank you for talking us through that.
You wrote something recently about power, and I'd love to shift to that. I still find power an interesting thing to talk about, and I'm conscious of the power and privilege I hold in spaces too, even just as the host of a podcast. You talked about sharing power. What are some of the ways we can do that meaningfully, in organisations or in community?
William: It's really complex, because talking about power dynamics automatically means there's a hierarchical structure in the conversation. I went from being someone who just participated in workshops, not really knowing what direction my life was going in, since childcare, my plan when I left high school, didn't work out, life teaches you hard lessons and it just wasn't the right fit, to eventually being board chair of the same organisation I started in without knowing where I was headed.
I always reflect on my power in that hierarchical sense. I think about how, as a staff member, I'd want to be treated by someone who, by title, holds a lot of influence and decision-making power in the organisational structure. As chair, I've made sure to attend events, project launches, and to come into the office to see staff, even just for general conversation and curiosity, because I didn't have that when I was working there as a project worker. The question I always had was, I wonder what the board is doing, I wonder what they think, because I didn't see much of that interaction. There was always this assumption, or occasionally you'd get to see the chair, or if you were lucky, a board member, and you're left with this big question mark of who these unknown people even are.
What I've tried to do is go into the office at least once every three weeks, and if not that, attend project launches and VALID events, because I think about all the new, upcoming self-advocates in that position. I don't want them thinking "the CEO's boss" and assuming that person is too important to bother with, the way I used to think. I want them to know there are people involved, not just titles.
I was lucky, my predecessor as chair, Arthur Rogers, was such a role model. He did what he could with his capacity, even though he was busy and influential in a lot of places, and I aspired to be like him when I took on the chair role, because he did such a good job. I can't say the same about the chair before him, or before her, Deb Johnson, who was lovely, and who used to come into the office and vacuum the floors during my shift. I used to think, why is the chair doing this, isn't that a cleaner's job? But she did it because she wanted to break through that professionalism and find a different kind of connection. So I'd actually retract what I said and say every chair has had their own strength, but for me, I wanted to break through the idea that just because you have a big title in an organisation, it doesn't mean you stop being a person too. That's why I do what I do.
Bree: I love that, and it's an important lesson for leaders listening about inclusive leadership. Sometimes it's as simple as having conversations, creating space and time. I'm conscious of time, so let's get to the last question. What's one thing you'd like organisations or DEI practitioners to do this week, to progress inclusion through the lens you have?
William: Really push for staff members with lived experience of the subject matter to be employed in consistent, ongoing jobs. It's all well and good to run temporary initiatives, or talk about DEI and intersectionality, and intersectional inclusion, another phrase I heard a lot in government, but whatever project, focus group or co-design process you're running, have someone with lived experience of that subject matter, LGBTIQ+, mob, disability, culturally and linguistically diverse community, or women and gender-diverse experience, actually leading those conversations. Give them a reason to be there, so they're not just handing over their livelihoods and trauma, but able to pay their bills and get through this uncertain economy too.
That's my main piece of advice. And whatever you do, deliver the resources and actual results of co-design and DEI initiatives in a meaningful way, because I don't think people realise that once the initiative is "over," the job isn't done. Just look at America right now, people are fighting for their rights to vote, to be heard and listened to. If a first-world country like the US, held up as an example for years, has people fighting for that right now, then the conversation about inclusion never really has a full stop, because so many people are still fighting for the bare necessities.
My final closing words: being invited into a room is not the same as having influence. Being consulted is not the same as being listened to. And being present is not the same as having power. I said that at a recent speaking engagement, and I've been thinking about those three things, because we need to shift our focus from how much effect we have as individuals, to how we can influence a community conversation, and bring people who actually know what they're talking about into the room, instead of guessing.
Bree: Wow. Full stop, indeed. Thank you so much, William, for coming on and sharing all of that with us. We'll put some links in the show notes to some of the things you mentioned, and ways people can find and hear more from you. Thanks everybody for listening in, and we'll catch you on the next one.
William: Thanks, everyone.